30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Sjogren’s Autoimmune Disease, a few others (boring!)
2. I was diagnosed in: 1999 and 1007, respectively
3. I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: focusing on basic daily needs at home
5. Most people assume: Being dry is no big deal if you sip water
6. The hardest part of mornings are: Trying to slowly and safely open my eyes
7. My favorite medical TV show is: No TV, movies and old dvd's only
8. A gadget I could not live without: The reassurance of having my epinephrine needle handy though I haven’t used it yet
9. The hardest part about nights are: Having to do a lengthy routine when I'm so tired-I make it worse as I am a night owl
10. Each day I take__ pills: (no comments please) 7 pills, 6 meds for eyes
11. Regarding alternative treatments I have tried: Acupuncture, chiropractic, yoga, relaxation techniques, massage, countless supplements, naturopathic doctor. None really helped and most supplements hurt due to salicylate sensitivity
12. If I had to choose between an invisible illness or visible one I would choose: Very hard. I might choose visible if I could talk and see as freely as before
13. Regarding working and career: I would love to be able to work to help support my family, but my health does not allow. I am thrilled to now be able to take care of the basics at home again and help facilitate my daughter’s learning
14. People would be surprised to know: Some days I cannot drive due to eye pain and I have 50% esophageal functioning
15. The hardest thing to accept about my new reality has been: Constantly disappointing people because I cannot participate in all the activities I once did before
16. Something I never thought I could do with my illness that I did was: Return to school by Distance Learning
17. The commercials about my illness: Fibro-for drugs possibly/ Sjogren’s- none?
18. Something I really miss doing since diagnosed: cross-stitching, being carefree outdoors in the wind and sun
19. It was really hard to give up: most normal foods due to allergic reactions
20. A new hobby I have taken up since I was diagnosed is: carting miniature horses, raising rabbits and writing
21. If I could have one day of feeling normal again: I would hope to be able to attend my children’s graduations/weddings
22. My illness has taught me: To be more patient and tolerate others who I do not understand
23. Want to know a secret? One thing that people say that gets under my skin is: You look great!
24. But I love it when: People do not pressure me socially and recall not to wear fragrance near me, especially in my home where it lingers and I react for days to come
25. My favorite scripture that gets me through hard times is: Psalm 46:1 "God is our refuge and strength, an ever-present help in trouble."....I've found him faithful
26. When someone is diagnosed, I’d like to tell them: It is time for ‘Plan B’ and God is good and will give one. Find an inner circle of trust-worthy friends, look for the Grace and life will go on.
27. Something that has surprised me about living with an illness is: The smallest things mean the most now. Life is still beautiful, the sky is bluer and loving is more passionate
28. The nicest thing someone did for me when I wasn’t feeling well was: believed me
29. I’m involved with Invisible Illness Week because: I want to help raise awareness and support others
30. The fact that you read this list makes me feel: Really grateful that you took the time to read and hopeful you will believe those whose illness is invisible. It saves lives.

Wednesday Photos

Here are some photos of how we spent the last week of our summer vacation at home...lots of good old free activity within our own area. I ended up having some Pre-Class assignments to do and needed to rest, but got in on some of the action. We visited an art museum in the area and took the girls to the Safari Park at Great Adventure-no rides, mind you. (What parents!) We were also blessed with complimentary tickets to a 5 stage outdoor concert not too far away with many Christian musicians. Amongst my favorite and most talented in my opinion, was Phil Keaggy. I did the math and realized my first concert seeing him was 32 years ago, so fair to say, I am getting old while he seems to simply be getting more adorable. We ended our week with a spontaneous bonfire. Hubby just hauled huge slate rocks in a circle and dug our own fire pit in the yard. Probably just another one of those situations where we were in need of another 'permit' this summer.......God provided much grace for me to do a few things that I normally would not always be able to participate in. As our girls would say 'Way Cool."

Growing Dreams

I’ve been living life in basic survival mode for a long time now. Life easily becomes about making it through the day. At times, taking care of a chronic illness and attending to family needs and expectations causes my cup to be quite full. That is when I am reminded to take life as a book and read at my own leisure as well, that balance is good, and so is time to explore a few dreams left living.

In this book of life, there are some chapters that I am a bit afraid to live and can only do it through Grace. I’ve made mistakes, I’ve set goals and dreams and watched them burn. I’m thankful that God always has my best interest in mind, that all from his hand is good. Though, considering new goals takes courage and at this point, a realistic consideration of abilities. Since the new year, I have felt a nudge, this gentle push to move me into action. Some thing more the than monotonous pass go and do not collect two hundred dollars as in a monopoly game.

So, I have prayed and listened and I’ve listened some more. I’ve mostly watched where God has already planted my own two feet the past few years. And I’ve spent a little time wondering where the next stroke on the canvas of my life will lead. I know now that it will not be even remotely what I had planned. I am taken back that God is again faithful to make his vision my own.

God has spoken to me through people, and through his scriptures and also significantly through the reading of Oswald Chamber’s writings this year. I’ve been reminded that God often can use the weak and I like what Chambers has to say:

“What is my vision of God’s purpose for me? Whatever it may be, His purpose is to depend on him and on his power now. If I can stay calm, faithful, and unconfused while in the middle of the turmoil of life, the goal of the purpose of God is being accomplished in me. God is not working toward a particular finish-his purpose is the process itself......It is the process, not the outcome, that is glorifying to God.”

I like that quote as it has played a role in getting me ‘unstuck’. I now feel I can set a goal and not be all consumed with whether or not I will be able to complete it. I haven’t told many people as possibly some times in a life book, we fear the words themselves, finally written or even whispered a loud, may cause one to miscarry the growing dream. But I have to share it now, as my time and priorities will all need adjusting and I will not be nearly as visible around the internet as I have been. This blog may go quiet again for a long while until I adjust.

This week I am starting back to home educating my daughters, but am also beginning a two year Spiritual Formation and Direction Program for myself. As life would have it, I’ve paused and leaned long on this leading. I’ve had several affirm my simple desire to use it to continue befriending and companioning the chronically ill and hurting people that come into my life, and gain a little more experience to do so. I am only committing to one semester at a time and will determine the practicum and completion, depending on my own health. I think I will enjoy it a day at a time this way. God has been faithful to steady me and remind me that any eventual outcome or none at all is just fine. It’s the moments, the days and the experience that counts.

At times I even feel a bit selfish in all of this, as I have enjoyed preparing for this: planning, purchasing and beginning to read the books with the excitement of a little child. Even more so, is that I have grown to love relating to others who are ill. They are fun, creative and courageous people, which makes no sense for people in pain, but I’ve found it true and as it turns out, loving is good for our souls. My loving and giving in the smallest of ways helps me. It’s really as simple as that. I want to be a friend, a companion, that equally encourages another’s life and spiritual journey and I’m done running from this seed of a thought that was planted in me long, long ago which I feared.

God comforts me through Oswald Chambers words, “His training is for now, not later. His purpose is in this moment, not way down the road in the future.” So, I am fixing my eyes on God, rather than if I can meet the ultimate goal. I will attempt to be mindful to live each day, and we will all learn together side by side- each moment, in attempt to be obedient to our Guide. I will give this a try. There, I said it and wrote it.

See I am doing a new thing.
Now it springs up; do you not perceive it?
I am making a way in the desert
And streams in the wasteland.
Isa 43:19